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Stories For An Unborn Son

It began with a hiccup as one cell tried to transfer its data to another. It began long before I, your mother, was born. A gene mutation, carried invisibly by women and passed to sons, snakes through our family tree. It is a fragment of history we can trace, a tiny bundle of stories floating in our blood.

In males the primary symptoms of this genetic condition — hypohidrotic ectodermal dysplasia, or HED — are sparse hair, peg- or cone-shaped teeth, and the inability to sweat. At every moment, a normal human body engages in a struggle against death from overheating, releasing at least a quart of perspiration a day and up to several gallons in extreme conditions. But a body without sweat glands flies on faith.

The secondary traits of HED include certain distinctive facial features, such as dark circles around the eyes and a saddle-nose deformity: a deep depression in the bridge of the nose. Sufferers have trouble breathing, so they have trouble sleeping, and in turn they have trouble staying awake. Because of their hollow-eyed appearance and sallow skin, they look ill even when they feel fine. On the other hand, they often are ill. An immunodeficiency associated with the disorder may lead to a lifetime of respiratory infections. The older a man with this disorder gets, the less his body may respond to medication, and the worse he may feel. Despite the fact that HED is said not to limit life expectancy, I have learned that the pain a sufferer feels may make him wish to die.

As I tell you this, you are nothing but a phantom, a presence, a spirit. Though you have not yet taken up a place in my womb, one day you could. We might find ourselves thus: you, a fetus with a genetic defect; your father and I, parents with an impossible decision to make — whether to bring you into the world. Right now we don’t know if you will ever be conceived and, should you be, at what stage we might choose to end your possible life. Already you have taught us some of the most important lessons we will ever learn. If you were born, you would teach us still more. But should we have a child to improve our character? To steady our moral compass?

Baby boys with HED look like little old men, with chubby jowls and gummy grins. “My little dandelion boy,” my mother cooed to my infant brother, brushing her fingertips over his wisps of white-blond hair. When I was ten years old and people were startled by my brother’s looks, I’d tell them, “I would love to have a baby like him someday.” My mother explained to me that I possibly could. Since then tests have confirmed it: Half of my eggs carry the gene mutation. One in four of my pregnancies will produce a healthy girl. One in four will produce a healthy boy. One in four will produce a healthy girl who is a carrier, like me. And one in four will produce a boy with HED.

My baby brother was wonderful indeed. Still is. Smart, funny, tall, smooth skinned, and strong, he does wild impressions at holiday meals, swoops the cat up from his great height and snuggles her, not caring if everyone in the world sees him. My brother is loving, creative, complex, and pained.

I have heard other women whose siblings have HED say, as I once did, “I would be proud to have a son like my brother.” But now I want to ask them, Is this really about you? Is this really about how much you would love the boy? Have you tried to imagine the pain he might suffer? Sometimes people don’t believe me when I insist that I am not afraid to raise a boy with HED. “This is not about my life,” I tell them. “It’s about his.” But when I am honest with myself, I find that there is no clear line between the two. My child’s good fortune will nourish me. My child’s pain will break my heart.

How can I imagine your life, its possible suffering and its possible joy, and then make a decision about whether that life is worth living? How can I even guess?

I once stood at my grandfather Earl’s grave. He died when I was a baby and is buried beside his mother in Kimball, Nebraska, where sprinklers leap over the cemetery’s green grass in summer. Beyond the lawn are the rocky, dry wheat fields where he grew up. He was lucky to have survived his childhood. At forty-nine he died poor and alone, his organs exhausted by infection and decades of drug abuse — chemicals he’d wielded against his pain, like a fly swatter waved at a dragon. He was in the midst of mapping out a plan to save the world. He still believed his lost wife would return to him, his estranged children would be awed by his inventions, and the medical community would greet him with prizes and fame.

Because I never knew your great-grandfather, his life is just a story to me. But I trust his stark tale and the warning it gives. I allow him to represent my worst fears. I tell myself that he would be happy to know that I do this.

What makes a life go wrong? Not just our genes, certainly, but also the ways people react to our genes. It is not a big nose or crooked teeth or an acne-prone forehead that makes a child shy and full of self-loathing and determined to prove himself. People give those genetic traits meaning by judging them good or bad, beautiful or ugly, strong or weak. I know my future children will be judged regardless of their health. Still, I feel compelled to shield them from any harm I can.

I would consider preventing your birth in part because of the reactions others will have when they see you. In the future that I fear, these reactions will become a kind of reality for you. If someone tells you that you are sick, you will feel sick. If they tell you that you are weak, you will feel weak. If they tell you that you are ugly, you will search desperately for ways to look handsome.

I will tell you that I love you, and you will know that I mean it. I will never tell you that I feel guilty, but you will know that, too, by the way I dote and worry too much about what you eat and how much sleep you get and what the children say to you at the bus stop. (Have they called you “cancer boy”? Have they said that you look dead?) I will come early to pick you up from school and stand in the gym doorway and watch the other boys: Do they pass the ball to you? And I will listen to the tone of the girls’ voices as they chatter around the drinking fountain where you go to wet your T-shirt and cool off. In summer I will supply you with spray bottles and fans. In winter I will buy you balms for your dry lips and make you button your coat. You will feel crushed by my protection.

One day I will tell you, as if I happened to think of it just then, that you could use my makeup on the shadows beneath your eyes if you want. That you could use my pencils to draw in eyebrows if you feel like it. I will get angry when you don’t put Bag Balm and Eucerin, those thick healing creams, on the patches of eczema on your skin. I will be angry if you scratch until you bleed at night. I might yell when you don’t use saline in your nose, even though it makes you sneeze and cough. I will believe that you are making the others not like you. You will tell me that other children, children without HED, have sinus and skin problems too. You will say that children don’t often judge you. You will try to convince me of this, but I will not hear it, because I will be too immersed in my project of undoing damage.

This is how a life goes wrong.

I never understood my great-grandmother Josephine’s guilt about Earl, her eighth child, her baby boy, the one she kept pulling sadly under her wing. What choice did she have? She couldn’t have known that Earl would be born with a birth defect. There she was with her husband on the dry farm, their boys growing up and leaving. Only daughters remained. Getting older, Josephine and her husband needed sons, and this too-hot boy was all she could manage in the end. No one blamed her — except, perhaps, her husband, whose back was breaking. But little Earl must have known, before he knew many things, that his mother felt guilty about something.

Earl grew up to be a chemist and a medical professional, and he knew, by the time it mattered, that he had a genetic disorder that his children could inherit. Still, he didn’t know that he could pass the mutation only to his daughters, who would almost certainly be carriers with no symptoms. Earl must have felt so lucky when his baby-doll girl arrived, followed by his two sweaty, yelping boys. He must have felt anointed. But his pain and addiction pulled his focus from his children. And his wife was too practical for tenderness. Along with the mutant gene, my mother inherited something else from her father: a sense of injustice about her unhappy childhood.

By the time my mother married, she knew there was a risk that any boys she gave birth to would have HED. She might have adopted, but the thought never crossed her mind. Having babies would be my mother’s deliverance. To recover from her suffocating childhood, she would make a family of her own. She would flood her offspring with attention, as if to prove it could be done.

My mother’s guilt over Luke, like Josephine’s over Earl, has always seemed unwarranted to me. Both women needed children in order to survive. Neither had a choice: no test had been devised. It wasn’t until years after Luke’s birth that scientists discovered the location on the human genome of the HED mutation. Thrilled, my mother called me in my college dorm room to tell me there was now a test for the disorder: Women could know whether they had gotten the gene from their mothers. Mothers-to-be could discover whether their male fetuses, and even embryos, carried the defect for HED.

What would my mother have done if she’d had such a choice? During her courtship with my father, she’d followed him into Catholicism, and its clear-cut rules suited her. She might have listened to Church doctrine and said no to abortion. Or, confronted with the possibility of giving birth to a boy who would be like her father, she might have gone straight to a clinic. She wonders now. It is a question she cannot answer. She is, of course, happy that Luke is in the world. That is another thing entirely. The question is not about what is. It is about what might have been.

Women hear all the time that they must break their family’s destructive cycles. I look back at the cycle of guilt in the carrier-mothers before me and wonder: Could I be different?

“I wouldn’t want to pass this on,” my grandfather Earl told the best man at his wedding. He was hesitant to make babies with his new wife, not aware that a daughter — my mother — was already growing in his bride’s womb. “It gives you pause,” he said, stepping toward the altar.

Fifty years later I hesitated to ask my brother to participate in a blood test, to let scientists examine his genes alongside mine. “I don’t want you to think there’s something wrong with you,” I told him.

He shook his head and held up his hand. “I wouldn’t want your kids to have it.”

Because of the test, I am the first woman in my family to have this choice. If I have you, a son with this disorder, it could mean only that I wished it. And I do not.

Here are the options your father and I have: To adopt a child. To conceive naturally and have our pregnancy tested at ten weeks, then to abort an affected fetus after the test results come back two weeks later. Or to pay much more than we can afford for in vitro fertilization (IVF), in which healthy embryos, made from your father’s sperm and my eggs, would be implanted in my womb.

There is a chance, no matter which method we choose, that you will slip through and be born. Giving you up would not be an option. I hesitate because I do not want my son to experience this disorder, not because I don’t want to raise a boy with HED. Your father and I would trust ourselves more than anyone else to parent you. We would raise you eagerly, with heart and tenderness and humor and creativity. It is not a matter of capability. It is not a question of courage. If you are born, we want to be your parents.

But let’s go back to the list of options:

● To adopt.

Your father and I are driven to have children of our own. I’m not sure why. Maybe we want to know if our bodies can do it. Maybe we want to experience the sheer strangeness of it. Maybe I want your father to see a part of himself expanding inside me. Maybe I want to give birth, to feel that ancient pain, to press a sticky newborn to my breast. If I had no usable eggs of my own, I would choose this option without hesitation. But I am able to create children, and I have a 75 percent chance of conceiving a child without symptoms of HED.

● To conceive naturally and have our pregnancy tested — and then, if it is positive, to abort.

My greatest fear is that I will fight my husband on the decision. That I will become crazy and irascible and fierce with motherhood. That I will tell him, “No abortion, no matter what.”

“Put your agreement in writing,” my doctor said when I told her my fears. “Before you become pregnant, put it on paper.”

● To pay thousands of dollars for healthy embryos to be implanted in my womb.

Because embryos are infinitesimal cell blobs, unrecognizable as humans, in vitro fertilization seems — despite its pain and complexity and expense — like the easy choice. Doctors, not us, would discard the affected embryos, so we wouldn’t feel directly responsible for determining who should be born and who should not. And whereas we would feel the need to keep an abortion to ourselves, we could talk openly about our IVF experience.

But one day I asked your father, “If someone gave us twenty-five thousand dollars, what would we do with it?”

“Finally fix up the bathroom,” he said.

“And get that bulge out of the living-room ceiling,” I added. “And straighten out this tilting house.”

Or maybe we’d use the money to pay back a third of my college debt, or to get a second car. What we weren’t saying, it didn’t take us long to realize, was “Buy a 30 to 40 percent chance at conceiving a healthy baby.”

Clearly we had some reckoning to do. Maybe we were just horribly materialistic. Maybe it was hard to justify spending that kind of money for a not-so-good chance of getting pregnant when we could stay at home and do it ourselves with a 75 percent chance of making a baby we’d keep. Or maybe the difference between a pen-dot embryo and a thirteen-week-old fetus wasn’t really the question at all.

The pope recently declared that a fertilized embryo, even before it attaches to the womb and becomes a pregnancy, is a human being with rights. According to him, it is as great a crime for me to discard you at the eight-cell stage as to discard you at thirteen weeks, when you would have the core of every organ and the beginnings of fingernails and the buds of tiny teeth. I appreciate this point of view. I love life and believe that there is a divine spark in every living thing. But the more human a creature seems — the more warmblooded and bright eyed — the more precious it is to me. Though I have at times smashed hairy spiders and buzzing flies, albeit guiltily, I can’t imagine how horrible it would feel to stomp a squirrel to death.

I picture the pope placing in front of me an eight-celled embryo and a thirteen-week-old fetus, four inches long and baby shaped. “Which of these could you kill?” he would ask me. Right then and there, I could crush the embryo beneath my thumb. But the fetus, with flesh recognizable as flesh, I would not touch.

It is hard work to assess the significance of every life. Religious faith can assure us that all creatures’ lives are meaningful. But people who don’t rely on religion to assign meaning must do it themselves, on a case-by-case basis, as I do with the fly, the spider, the squirrel, the embryo, the fetus. And I know that I am not up to the task.

Millions of people would tell me that I have no right to choose against having you, whether you are an embryo or a fetus. They warn against the “new eugenics,” in which only those deemed “desirable” would become babies. The eugenics movement of the 1920s and ’30s advocated selective breeding and, in some cases, forced sterilization as a means of creating healthier people and lessening human suffering. Abortion opponents argue that those who forget this history are doomed to repeat it.

But this argument assumes that all couples picture the same ideal child. As long as reproductive choice isn’t institutionalized, but remains within families, there is no chance that our gene pool will slide downslope into homogeneity. Our desires for our children are too different for that. When I think of the past I do not wish to repeat, I think of your great-grandfather and how his organs failed one by one, killing him so violently that I’m told he couldn’t smile when he saw one-year-old me, giggling and chattering.

Sometimes critics of abortion say they are glad that talented people with genetic diseases have lived: Abraham Lincoln (Marfan syndrome), Charles Dickens (bipolar disorder), Vincent van Gogh (epilepsy). So am I. But should a person’s contribution to society take precedence over his suffering? We don’t know how these famous men felt: achievement is public; pain is private. Your great-grandfather patented three medical inventions, including the first plastic nebulizer. As an orderly in a Colorado hospital, he had watched the old glass-bulb nebulizers shatter over asthmatic patients’ faces as doctors tried to deliver medicine into their lungs. During his time off, he designed the safer apparatus that remains in use today. Thousands, perhaps millions, of people have benefited from his work. But does this justify his suffering? He fervently hoped his descendants would be free of HED. Should I give birth to you in hopes that you will find a cure for your disorder?

One day I told my mother-in-law that I simply could not fathom choosing against any child I might conceive, regardless of his health.

“Aren’t you on the pill?” she asked me.

“For ten years.”

“Then haven’t you already chosen against that baby, month after month?”

She’s right. Intervention is a choice — and so is leaving a child’s fate “in God’s hands.” I want to say to the holier-than-thou critics who do not want to know their baby’s health before birth, who claim they would refuse an abortion even if they did know, who say they could never live with the guilt, “Don’t be proud. You would pass that burden to your child.”

As a mother, I will make mistakes. There is no escape. There is only accountability, apology, atonement. Despite my best intentions, I know that I could be wrong.

Do I possess the courage it would take to have mercy and let you go? So many times I have failed to understand mercy. The first time I saw it, I mistook it for murder: It was summer, and my parents, my siblings, and I were camping with another family. The two dads took us kids fishing and caught a beautiful carp. The hook was embedded so deeply in the fish that the dads couldn’t get it out to throw the fish back. Instead they laid the carp on the shore. I hadn’t given any thought to the problem with the hook. I was watching the fish’s iridescent scales, which refracted rainbows as though they had been bathed in amber oil. I was watching the fish’s lips, which looked like cartoon lips as they kissed the air. Smack. The other dad crushed the carp’s head with a sharp rock. The fish fluttered and twisted; the blow hadn’t been hard enough. Smack. Smack. Until the carp was still. “It’s what he had to do,” my father explained later. “Otherwise the fish would have suffered.”

“But it did suffer,” I said.

“It would have suffered more.”

Maybe with all acts of mercy there is a risk that one will choose wrong. And she will live with that pain for the rest of her life, or until she takes mercy on herself.

I have had several gardens, but I feel like an amateur, because the thought of thinning young plants still saddens me. I follow seed-packet instructions for depth, spacing, shade, water. But when it comes time for thinning — pulling the two smallest of the three sprouts from every hole — I balk. I cringe. I stay inside and wash dishes. I planted the sprouts — each plump, robust, and tender — too close together as a precaution, in case only one should come up. As the gardener, I now have the job of picking the one I believe will make the healthiest fruit. I must tear out the other two and throw them to the rabbits.

Again and again I have failed to thin. How can I rip out plants that seem so vulnerable, so alive? It is too difficult to determine, based on appearances alone, which little sprout has the best chance at a good life. Many times, because of my hesitation, all of my baby plants have withered. But this spring I am trying to look at thinning not as an act of violence toward the uprooted shoots, but as an act of love toward the chosen ones; an act of love committed in full knowledge that it could fail. The strongest-looking might, in fact, be diseased. The shoot racing skyward may not have the fortitude to make it to the end. A digging dog could destroy everything in one scrape of the soil. Drought might come, or hail, or a late frost. A good gardener knows that all of this is out of her control. Yet she uses her best judgment, keeps a steady hand.

I would like to promise that I will be happy during the first trimester, the thirteen weeks before tests reveal whether it is you or a healthy boy or girl in my womb. I would like to promise that I will imbue you with joy and not let you feel the worry in my heart as I wait for test results, or the devastation on the morning that I let them take you from me.

During her abortion, my friend was angry that the doctor refused to use the words pregnancy and baby. He corrected her: “It’s just a clump of cells.” While vacuuming out her uterus, the doctor tried to talk with my friend about a new movie. She didn’t respond. It was important to her to feel the enormity of her choice, to know its sorrow. Do we heal better if we focus on the thing we’re giving up: if we keep our gaze on the loss; remember the significance of our choice; and feel, without flinching, the ache of it?

I assume certain things about you, although I should not.

I assume that you will be rather good-looking, as the men in our family with HED have been, even though I have seen the pictures in medical books of subjects who do not have my brother’s strong, sloping jaw; his bright eyes; his smooth, tanned skin.

I assume that you will be vulnerable, that childhood hurts will color your life. That you will be too ambitious, that you will risk everything, that you will someday wish to die.

I assume that you will be interested in our family tree, that you will see your life as a chapter in a long-running story.

I assume that you will not meet Earl in the hereafter; that you will not look down on me, both of you shaking your heads slowly, saying, She didn’t understand. She didn’t understand.

I assume that, even though you may not know what is happening, you will feel your spark go out.

I assume that I will love you if I meet you.

I assume that, either way, you will never forgive me.

There is still so much I haven’t thought of: You might be misdiagnosed in the womb, a rare error making you look broken when you are not. We could die together in childbirth. You might die the summer you turn twenty, electrocuted like our cousin Johnny, your dry skin conducting the electricity like copper wire. You could be the first botanist to breed a blue rose. You could become a woodworker, like so many of the men in our family. You might love the tick-tock of a wood-burl clock. You might be poisoned in my body before I know you are there: by paint fumes I breathe, by beer and wine I drink, by a dead bird I brush while weeding. You could be just like your great-grandfather Earl. You could be just like your uncle, my brother. You could be like me, or like your father. You could be simple. You could be wise. You could be shy and alone. You could be dangerous. You could be the only child I ever will conceive. Or you might come to us not just once or twice, but again and again, adamant.

Bonnie J. Rough’s essays have appeared in the anthologies Modern Love: 50 True and Extraordinary Tales of Desire, Deceit, and Devotion (Three Rivers Press) and The Best American Science and Nature Writing 2007 (Houghton Mifflin). She teaches at the Loft Literary Center in Minneapolis, Minnesota, where she lives with her husband and walks around the neighborhood lake almost every day, no matter what the weather.

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